Program Director, Direct-from-Patient Contributed Health Data

Department

BSD PED - Hematology, Oncology, and Stem Cell Transplantation - Pediatric Cancer Data Commons: Operations

About the Department

The Biological Sciences Division’s ‘Data for the Common Good’ (D4CG), is a rapidly-growing team of experts in medicine, clinical research, public health, data standards, data infrastructure and programming, data governance and international data sharing. Headquartered in the Department of Pediatrics at the University of Chicago, D4CG works to connect and share disparate data sets in order to alter long-standing research paradigms and enable the study of new research questions that drive cures. Its signature flagship project, the Pediatric Cancer Data Commons (PCDC), houses the world’s largest set of clinical data for pediatric cancer, uniting clinical data from across five continents for almost all types of pediatric cancer. Leveraging its expertise in establishing data commons, D4CG has expanded to create similar infrastructure across other rare diseases, including rare forms of diabetes, pediatric epilepsy, Crohn’s and ulcerative colitis, traumatic brain injury, and adult cancers, as well as a university-wide initiative called the Sociome, a scalable and extensible infrastructure and architecture that will ultimately assemble, quantify and organize the entirety of social context experienced by every individual. Across this work, there is increasing interest in adding electronic health record data directly from patients, expanding the versatility, extensibility and power of these data collections.

Job Summary

The Program Director for Direct-from-Patient Contributed Health Data will coordinate the development, integration, and management of technology platforms that enable the collection, storage, and analysis of health data directly from patients. This role requires substantial prior experience with data systems, understanding of healthcare data privacy regulations, and a focus on ensuring that patient-contributed data is securely and effectively utilized to drive research and ultimately improved healthcare outcomes The ideal candidate will assemble cross-functional teams, liaise with stakeholders, and ensure seamless integration of patient data into larger health data ecosystems.

This at-will position is wholly funded by contractual grant funding which is renewed under provisions set by the grantor of the contract. Employment will be contingent upon the continued receipt of these grant funds and satisfactory job performance.

Responsibilities

Program Leadership & Strategy 

• Work alongside subject matter experts and other key leaders to define the vision, strategy, and roadmap for direct-from-patient data collection initiatives. 

• Assemble and guide multi-disciplinary teams to develop and deliver technical solutions for patient-contributed data platforms. 

• Collaborate with key internal and external stakeholders to align project goals with organizational objectives, research needs, and regulatory requirements. 

• Oversee program timelines, deliverables, and budgets, ensuring high-quality execution within set constraints. 

Technical Oversight 

• Coordinate with technical staff on the design, development, and implementation of data collection and integration platforms. 

• Work closely with technical, data standards, and data operations teams to ensure technical specifications meet project needs. 

• Advise on systems’ adherence to healthcare industry standards for data privacy and security, including HIPAA, GDPR, and other relevant regulations. 

• Remain current on emerging technologies and tools for improving patient data collection methods, such as wearables, mobile apps, and remote monitoring devices. 

Data Privacy, Compliance & Security 

• Ensure the project adheres to the principles of integrity, confidentiality, and security of patient-contributed data. 

• Coordinate with technical, governance, legal, and information security personnel to ensure compliance with health data regulations and best practices. 

Stakeholder Management & Collaboration 

• Serve as the primary point of contact for both inte